I’ve been struggling with chronic pain and illness for over six years now. In that time, I’ve come to some difficult situations and choices, and for the most part had no source material to turn to. Being without a specific diagnosis means that there are less places to access wisdom by those who have gone before – I read some that share symptoms or challenges with my reality, but even those who have a name for what’s going on find that there are times when your only choice is to struggle through and make the best choices you can. Sometimes we choose wrong; we do something that makes things worse, or we choose a doctor who treats us poorly, or our behavior during times of stress alienates the very people who want to support you the most.

These lessons are by no means definitive, or the only lessons I’ve learned, but instead I’ve chosen these because in hindsight I really wish someone would have given me advice (or even a clue!) in hopes of avoiding some of the inherent pitfalls involved.

10. There is a difference between someone who wants to help you, and those who want to solve your problems.

The people who have been the most supportive in times of difficulty are the ones who chose to assist me specifically so I could do more for myself. The ones who end up burned out and resentful are the ones who chose to do things in hopes of either doing things for me, or doing things with the expectation that things will get better in some form of permanent fashion. I could continually ask people to scratch my back, or someone could buy me a backscratcher. (And here’s where I thank the anonymous person who did exactly that.) You could volunteer to take dictation when I can’t type, or you can help me find dictation software I like or suggest another way of sharing my thoughts (like a podcast). This lesson taught me not only how to tell what a person’s intentions are (to help or to solve), but how to phrase requests in very specific ways so even those who are inclined towards solving end up doing things that make us both feel good. If I know you’re a “solver”, instead of asking for something nebulous (like, “I need a way to move my legs more without causing pain”), I take a little more time and ask for something more specific (“I need one of those cycle bikes that rest on the floor and have a motor, here is a link to a few I like on Amazon.”)

If I’m unsure of what the specific need is, that’s when I turn to the helpers. Because they are focused on supporting my independence as much as they are focused on the challenge at hand, their brainstorming will naturally drive itself towards choices that give me more freedom and less reliance on others.

I’m not saying one is bad and the other is good; I’m saying that in order to lean on my support system without burning everyone out, having a general sense of how someone feels helpful can expand and strengthen your team. Just like you go to Joe when you want to gossip, and choose to go shopping with Pat because they have a style sense that matches your own; knowing who is best qualified to get your through a hurdle makes it easier to ask and receive with the least amount of guilt. Which leads me to…

9. People generally want to help as much as they can; those that won’t or can’t will make themselves known.

It seemed somewhat obvious to list “Asking for help is hard”, because you don’t need to be chronically ill to know that. What I’ve learned about opening myself up to receive help when I need it is that sometimes the “obvious” choice isn’t the right one. One of my people who drive me to doctor’s appointments comes from 3 hours away to do so, usually coming in the night before and leaving that evening. They’ve done this even when my appointment is less than 20 minutes from my house. I have tons of friends who live closer, but many of them have legitimate reasons why they can’t help out. Before I figured this out, I would totally freak out when I thought I knew the absolute “right” person for the job, only to have them decline or just not respond to my requests for help.

Another facet of this lesson is that although it can be downright frightening to be honest about something you need – especially if it requires large amounts of resources like time, money, or commitment – it’s better to be forthright. Even if someone can’t solve the whole problem, they may be able to help you by breaking the ask down to smaller chunks and delegating it to a larger pool of people. It might be difficult for someone to drive to my house, then drive to a doctor’s appointment two hours away, take me home, and then go back to their house. Instead, maybe one person picks you up and drops you off; another gets you at the docs and takes you halfway home, where someone who normally makes that commute can take you the rest of the way. Or if you need to clean house because you’re having a party, instead of asking one person to come the day before and help you out, you can throw a “pre-party meet-and-clean” so your shy friends can both do something helpful and get to know a smaller group of people before the throngs show up.

Before I learned that, though, I would frequently ask not for what I needed, but for what I thought people wouldn’t be offended by when I asked. I had to learn the very hard way that although it might be easier to ask for someone to drop me off somewhere and I’ll just use my walker to get around; if I wake up that morning and my arms aren’t up to the walker, I’m totally screwed unless my friend is physically able to deal with the wheelchair and has the time to stick around for my whole appointment. Or if I needed money to cover some over-the-counter medical stuff, I would sit and agonize over what I “really needed” and what I could “live without” or “make due”. Usually, someone would find out that I was using duct tape to hold bandages on or stealing alcohol wipes from the doctor’s office. They’d sit me down and remind me that people generally want to help, because knowing that their friend is in a bad way makes them feel helpless. Giving them the opportunity to make a difference makes them feel like they’re really doing something.

I also had to learn that there are people who will tell you many times that you can call them anytime if you need anything, but they are only being polite. In fact, I think one of the reasons that chronically ill people usually dismiss vague offers of help like these is because we’ve learned that there’s a good chance they won’t come through. Not necessarily because they don’t care or don’t want to (although there are people who don’t), but because they don’t have the resources or ability to help in the ways you need. You just get to a point where you know asking is a waste of time, even if you think they might be a good choice for one reason or another.

8. If your friend has stopped inviting you to fun group things, it is sometimes okay to check in and ask why.

If you’re wracking your brain to remember what you might have done to offend someone, because all of a sudden you’re no longer “on the list”, it could very well be because you weren’t able to attend enough other events because you didn’t feel well. Or maybe because the place where the party is a fourth-floor walkup. Or maybe because they know you don’t drink and so inviting you to the bar seems mean. And honestly, sometimes they’re worried about reminding you about all the cool stuff your friends are doing that you can’t participate in anymore.

I tend to tell people that these days, I see an invite as a way of saying, “We want you to know you are wanted”. Even if it’s obvious that I can’t participate, just knowing that when they were thinking of the top 25 people they want to go skydiving with, you’re number 23. Sometimes, I use the opportunity to see if some sort of adaptation can be made so I’m included – my friend has an upcoming birthday bash, but her apartment is up several flights of stairs; I asked her if maybe a day-after brunch could happen in a wheelie-friendly restaurant. Done! Other times, people are being too cautious about what I can and can’t do; I might have to bring a chair and take lots of breaks, but I am able to go to the bonfire in the woods given enough time.

7. If you’re feeling left out of fun things, make fun things happen in places and ways you can handle.

There are lots of times when I’ve been home on a weekend night, mooning over all the cool things people on Facebook are claiming to do that I can’t for one reason or another. And it’s not always about health/ability; I might not have the money, or couldn’t find a ride, or required me to RSVP too far in advance. Honestly, it didn’t occur to me right away that the answer was to take charge and plan fun things that were tailored to my needs. Now that I live in a completely-accessible place (thank the Gods!), I have been hosting more stuff. Not only do I know the place is accessible, but if I need a quick breather or if I get a bout of nausea/vertigo/pain/etc, I can duck into my room for a little bit and let my guests entertain themselves. And if I need to check out of the festivities completely, it doesn’t mean everyone has to leave. I just elect someone to take over hosting duties and disappear into the Del Cave.

And if the fun things that I want to do are location specific (like going to the Drive In), I can do my homework to make sure the place is accessible. I can also set up somewhere to be the Temporary Del Cave, whether it be in the car, in a friend’s spare room, or even the handicap stall. I tend not to carpool, so if I need to check out early no one else is inconvenienced (except whomever’s driving). If food is going to be part of the fun, I can call ahead to see if the food on premises is Del-safe; if not, I can usually find a small thing to pick at and bring food to eat on the way home. Even if I am worried that I will have to cancel last minute, I can make sure that people are as invested in doing the fun thing as much as seeing Del at the fun thing, so if I have to back out I know people are still having fun.

Even when I’m at my sickest, I’ve still entertained guests. I just make sure they’re informed up front that I’m not doing well and they should bring things to entertain themselves, or maybe even make plans to go be a tourist or go shopping at the Outlet Mall, so I don’t feel like they’re sitting outside my bedroom door breathlessly waiting for me to feel social again. That way, we both get to spend some time together, and no one feels mislead or guilty if I need a nap. It doesn’t hurt that we have wi fi and an off-brand Roku device, as well as tons of odd books to read. The town we live in has a few cool things to do, and we’re pretty close to places like Gettysburg and Baltimore if you really want to get your tourist on.

6. Needing a lot of down time, alone, can be spiritually enriching.

At first, any time I had bodily-enforced down time, my gut reaction was distraction. What book can I read, what show can I watch, what silly online game can I get lost in? Those are still good stand-by distractions, but when I’m experiencing more down time than up time, it can feel like I’m wasting my life. It only emphasizes all the things I wish I could be doing, or things I expected myself to be doing at this age that have been replaced with this stupid reality I did not want nor asked for. I start slipping down that greased slope towards the maw of depression. Depression brings it’s own symptoms and challenges, and it complicates your health situation that way. I struggled a lot with depression last year, but what became the rope ladder that got me going in the right direction was finding purpose in my rest. I re-started my meditative practice. I found some great online videos of seated yoga, wherein the guide repeatedly tells you that if a pose or stretch is painful, to just breathe and wait for the next one. I began sitting in front of my altars and just letting my mind wander. I began writing for the sake of writing, instead of feeling pressured to cater every word towards a goal – a new post, a new class, a new ritual, etc. I started a personal diary.

The more I found the usefulness in stillness, the more I began to see bodily-enforced down time as something to look forward to. It let me choose to slow down, even if I didn’t have to, which helps keep me from overdoing it. Even if I’m away from home, being able to find a quiet place to sit by myself and just listen to the nature around me can help me enough so I don’t have to run home at the first sign of discomfort.

It also helped me clear out some cobwebs in my Godphone pipeline. Whodathunk it was easier to hear the Gods when you weren’t constantly doing things or thinking things? It also gave me the joy of feeling the presence of my Gods when I didn’t need them; to be able to sit and commune with them without any goal or purpose other than to be. It fills my heart with joy when I have the distinct pleasure of sharing my life with my Gods, even when all I can do is lay in bed and open myself to them. It has definitely strengthened my bond with Hel, who quite enjoys my company and a cup of tea from time to time.

Just finding ways that make stillness productive in its own way, while still being relaxing and stressless, makes me appreciate that my body reminds me to do it from time to time.

5. Be honest, with yourself and with others, about how much time you can spend with them, and how you want to spend that time.

Maybe I’m in the minority, but I would rather have one incredibly long and windy phone call a month than seventy billion text messages a day. Not only do I know it is very likely I can find an hour to commit to said phone call, but it just feeds me better. I see text messages as a tool of necessity – I’ll be there in 20 minutes, Do you know BobJo’s phone number, Are you free for a phone call tomorrow, that sort of thing. This is also why I am rarely signed on to any online chat service. It feels too demanding – answer now or I will ask you sixty times if you’re still there!

It also means that if I’ve just spent a whole weekend with you in person, I can guarantee that I will spend the next week in lots of down time. I value in person time quite a bit, but I’m also content if it only happens once or twice a year. I understand that we all have busier lives now, and the convenience of immediate communication in McNugget sized bites is undeniable, but it just doesn’t feel right for me. I know this paints me as a luddite, and I don’t care. I care so much more about the quality of the time we spend together, doing things that we will remember and that matter to us, than trying to live up to demands of being always accessible and immediately responsive to all of the people who matter to me, all of the time. I am one of a few people I know who not only shuts off my phone from time to time, but I also leave it at home! Aghast, I know! (It may sound a bit crass, but now that both of my parents are dead, I no longer worry about there being an emergency I need to know about right away. I figure there’s nothing I can do about an emergency that can’t be done when I turn my phone back on, or check my email, etc.)

I know that I’ve been shit about answering email, but I’m making a real effort to get better about that. It’s not going to happen overnight, though. I get a lot of email, and the majority of it is the kind that implies a timely and personal response. I am also working on organizing my inbox so messages don’t fade into the abyss that is “the next page”, buried under reminders that Barnes and Noble is having a sale this week. I decided to focus on email because I enjoy exchanging written words with people; and email no longer comes with the expectation of an immediate response (unless it says so). I find that even if someone assumes everyone answers email in 24 hours or less, as long as I send them a thoughtful response that shows I took my time to think about what I wanted to say, I’m usually forgiven.

The point I’m trying to make here, though, is that no one has the right to dictate how you spend your time but you. Obviously, some kinds of relationships will want more time than others, but even then I consider quality over quantity.

4. “Go to the doctors” is not a solution of any sort.

Often, when I write about my symptoms, especially when I am worried about what they might mean, people tell me to see a doctor. On the outside, it makes sense. But the part that makes me want to pull my hair out is when people expect that a single doctor’s visit will somehow provide anything resembling answers. No matter how much information you bring with you, no matter if you write down your symptoms and questions beforehand, no matter if you’re self-educated about your condition or what tests might be necessary to figure out what’s going on, doctor’s appointments are rarely about answers. It only seems to apply if you’ve been seeing a doctor on a regular basis, have limited discussions to a certain subset of your symptoms, and have undergone tests and studies and what have you; then, maybe there might be some sort of resolution like surgery or treatment. 90% of my doctor’s appointments go exactly the same way; I come prepared to discuss my symptoms (including how they are limiting my ability to live life), and the doctor orders tests. The tests come back, and if I win the doctor lottery the first round of tests *might* show something treatable. Most of the time, it’s the beginning of a long road, where you are referred to several specialists, who all start from ground zero (because they don’t rely on prior doctor’s thoughts or opinions).

One of the biggest issues I’ve faced with the “go to the doctors” conundrum is along the way, someone will find an actual problem. In fact, I’m willing to bet that the more doctors you see, the higher the likelyhood that they will find something. This sounds like a positive thing, and in a way it is. It was good to know I had a giant abscess in my abdomen that needed to be removed. But it also meant that for the next ten months, it was the only thing I saw doctors for. Time and money being limited, it meant that I failed to follow up on tests from my neurologist, endocrinologist, and all the other specialists that weren’t related to the abscess. When I finally have the time to go back to these other specialists, I am always chastised for the lapse. Some tell me that I’m obviously not serious about finding treatment, and tell me to see another doctor.

On top of all of that, when I’m brutually honest with a doctor about the time issues involved, they act like they should be my only focus. I had been cleared for an uterine ablation three years ago (and I really need one), but the problem has always been that I have to schedule it four or more months in advance. By the time the surgery rolls around, I’m almost always in the hospital or about to be, for something completely unrelated. I have cancelled four ablation appointments so far. When I tell my OBGYN that the only way this will happen is if I can get it sooner, they act like I am asking for VIP treatment.

Another example: I saw a new neurologist last week, and I’m pretty excited about working with him. But I told him up front that I’m in a time where I can chase tests and make appointments and such, but that time is finite. I already know I have a new abscess growing in my abdomen, and there are a few other medical situations that are getting more serious. I explained to him one of the reasons I haven’t been able to get a diagnosis is because the doctor takes too much time to order and review tests and by then I have something more urgent to attend to. So what did he do? Schedule a test for a month from now, and a follow up two months from now. As I’m seeing my PCP this week about some stuff I am pretty sure will be determined to be more urgent, I might as well not bother.

Even with excellent insurance, there is a financial cost to all of this test chasing and multiple appointments too. I have to have money for gas, parking, and sometimes have to pay my driver. I frequently have to pay a fee so I can get copies of the results for other doctors (although this has gotten better since concentrating most of my specialists and my PCP through Johns Hopkins, since they have an electronic patient folder system where they can see what everyone else is doing). There are other kinds of costs, too, like spoons. I am worth absolutely nothing on a day when I have a doctor’s appointment, and doubly so if there some sort of test. Although Rave helps me a lot, I still spend time making the appointments, finding someone to take me, figuring out what I need to bring, if I need to fast or not eat certain foods, knowing and bringing what I need for comfort, etc. And none of that even covers the times I do all of this only to find out I can’t be seen, or if the machine won’t accomodate me, or if there’s no point to the appointment because the doctor hasn’t received the results yet. It’s ridiculous.

So yeah, when someone suggests I “go see the doctor”? I just laugh quietly to myself.

3. You are the only arbiter of what you put in your body/what you do with your body, and you don’t have to answer to anyone about it.

I can’t even begin to tell you how much shit I’ve been given about choosing to take opiates for pain management. Or about taking antidepressants (even though I take the kind I do because it also helps with nerve pain). Or about not eating healthy food every single minute of every day. Or about having an alcoholic drink (a single one) once every six months or so. Or about which supplements/vitamins/homeopathic remedies I should or should not be taking. Or people sending me articles about new medicines or treatments with the expectation that I will immediately talk to my doctor about it. And as those who have read the rules of this blog already know, I get tons and tons of people recommending alternative therapies, from yoga to acupuncture or reiki to magnets.

It can be difficult, because most of these people are legitimately concerned about your health and well being. They’re not trying to be obnoxious or naive. It is something they can do that makes them feel helpful. And oftentimes, they actually do know someone personally who has benefited from these choices in some way.

My decision has always been about quality of life over quantity of life. When I found myself breaking down into tears because the restrictive diet I agreed to try denied me the pleasure of having ice cream when I wanted it, (and this may sound juvenile but it is absolutely true) that I didn’t want to live if it meant I couldn’t gain what little comfort I can. I have been weaned off of opiates, and my quality of life went to zero (and doctors made the decision to put me back on, and chided me for agreeing to go off in the first place). I’ve tried to be open minded about alternative therapies, but especially now that I’m on a fixed income, I don’t have a ton of money I can invest in something that only has a small chance of making a difference. I can’t afford to shop in exclusive, trendy supermarkets in order to stick to a nutrition plan, especially if I don’t like what I do get to eat.

I make choices that don’t take my health into consideration. Everyone does. Whether it’s opting to forgo an exercise regimen, or getting tattoos when it may increase your chance of infection, or eating something knowing full well your body will hate you for it tomorrow, or skipping a meal every day in order to fit into that killer dress this weekend, it’s not hard to find examples of people making personal choices about how they treat their bodies that we might not agree with. Just because I am chronically ill does not mean I surrender the same right. I have to pay the same piper everyone else does. A life that is devoid of pleasure, comfort, and the occasional indulgence is practically inhumane, in my honest opinion.

3. If all you talk/write about is being sick, then the only thing people will know about you is that you’re sick.

Being chronically ill or in chronic pain is a very lonely thing. It is full of complex emotions and challenging moments that one really needs social support to endure. It can be liberating to express your inner dialog – your fears, your frustrations, your sadness, your oddly funny moments – so people might better understand what it’s like. It can help when your words encourage others to share similar stories, or even just leave a “I feel that way too” comment on something you wrote in a moment of despair. I would never, ever discourage someone from finding ways to communicate their struggle that ultimately help them face their illness with more resolve.

But before I started my second blog, most of my friends and acquaintances used this blog as their sole source for keeping in touch with me. As I consider this a blog – a place where I have a general topic and all of my writing ties into that topic in some way – everything I shared related in some way to either my personal experiences being chronically ill, or my insights about chronic illness and spirituality and the intersection thereof. However, many of those friends thought this was more like a journal – an accounting of my day to day life experiences – they began to think that I was consumed by illness and did nothing but go to doctor’s appointments and sit at home in pain. They didn’t call or write or visit because they were afraid to impose themselves, what with me being sick and all. I even had some professional issues because of this blog, where people refused to hire me or offered me smaller contracts so as to not overtax me. I realized that the blog had become a real issue, and I had to do something to remind people that I am still a dynamic, passionate, and lively person who has a lot of life to live yet. One of the solutions was to start Sex, Gods, and Rock Starsand take some time to promote it and build a following of folks who were only reading this blog because it was my sole expression online. It has been a real challenge, as making sure I am writing enough to keep both projects worthwhile (and to fulfill the Purposes for both – including my spiritual agreements about them). Sometimes I write more here, and sometimes there, and sometimes neither site gets updated for a while. But in the end, it has helped tremendously in creating a more realistic image of who I am as a well rounded and vital person who happens to also have chronic pain/disabilities.

2. It takes time to accept that the likely hood of “getting better” is not that great; not only do you need to accept it, but those closest to you need to, too.

Obviously, this is not applicable to every chronically ill person in the whole world; you may have relapsing-remitting MS where there will be periods of time where you feel pretty healthy. Or in a year from now, scientists will make a big discovery about your illness and there may be better treatments or even a cure. It’s possible that after years of not knowing what was making you feel so poorly, the right doctor will stumble onto a diagnosis that has known treatments to alleviate your suffering.

But for me, I’ve radically accepted that I don’t know what tomorrow will bring. At the same time, I have no delusions that it will take one thing to completely treat my suffering and sickness. Even if I got a diagnosis, the chances of it being something curable are pretty slim at this point – I’ve been tested for most of that stuff already. When those closest to me string their hopes on a someday cure, it makes me feel like they are not only ignoring the present but that they aren’t paying real attention to my journey thus far. There’s optimism, and there’s self-delusion. I’m optimistic that someday doctors will know why I feel sick/pain that may lead to more targeted treatments, but I also accept that if that happens some of those treatments are things I’m already doing (like pain management) and others will almost definitely take time before they work. I mean, knowing you have cancer doesn’t mean that in a week you’ll be completely cured.

I need people who can dig in and see the reality of today alongside me. I can really only deal with this in small chunks – maybe not quite “one day at a time”, but close – and if all you want to talk about is some nebulous future, I can’t relate to that at all. Deep inside of that optimism, too, there are crunchy bits of judgement (if you only took this more seriously, you’d already have a diagnosis/treatment) and denial (it’s not possible to have these symptoms and there be no singular cause). I have lost important people in my life because they failed to accept the reality of what is, rather than keep their eyes shut tight, hoping for the pipe dream of tomorrow.

It also subtly communicates that the lack of a panacea is my fault – I’m not choosing the right doctors, getting the right tests, chasing the right diagnoses, talking about the right symptoms, etc.

One of the relationships I had to end because of this kind of thinking was my therapist. I sought him out to be someone I could work through my feelings about my medical situation with, but by the fifth session he was so frustrated that my doctors had failed to diagnose my “obvious case of MS” that I had to ask him to stop yelling. The next few sessions comprised of me gently encouraging him to be patient with the process, and when I finally realized I had become his therapist, I ended the relationship.

1. Do whatever you have to do to survive.

I mean this literally and figuratively. Even if you hate taking daily medication (or in my case, testing my blood sugar four times a day), if it makes your life an easier place to live, it’s worth it. If you are starting to hate or mistrust your doctor, get a new one. Ending relationships that only complicate your life and cause you more stress and pain may be difficult, but if it will eventually make it easier to get through the day, do it. Taking a break from seeing doctors because you need to save the money you usually use for co-pays in order to pay rent/buy food/pay bills can be a legitimate decision. Telling your doctor that a medication is on your insurance’s third tier (the most expensive one) and that you need a less expensive option is completely understandable. Finding plans or cards from pharmaceutical companies that will net you discounts on your meds might make your doctor sigh because OMG paperwork, but ignore their huffing and bring it anyway. Asking your friends to remind you of cool memories so you can read them when you’re in despair is not selfish or self-centered. Saying “no” to a doctor is always an option. So is “I want a second (or third, fourth, fifth) opinion”. Refusing to settle for a physician’s assistant and wanting to see the MD in your doc’s office makes sense if you’re medically complicated. Late night trips to the ER because you are in excruciating pain, or having a symptom that is scaring you (like chest pains or not being able to take a full breath) are not wasteful.

Don’t let anyone ever make you feel bad for making the best choices you could, given your resources and knowledge.

If you just want the short version, you can skim/scroll down to the “Here is the TL:DR Bookmark”, and start there. You’re welcome.

As you all know, I had a panniculectomy in late December, from which I healed much faster than expected. The surgeon had predicted a much more dire situation, but in the end other than a little breathing issues on the table everything seemed to be going fine. By February, the surgeon was ready to start scheduling my follow-up appointments six weeks apart; we had agreed before the surgery that we would be following up for at least a year if not longer, because there was a really high chance of post-op complications. Six weeks was the maximum time between follow up appointments, so that’s how well I was doing only two months after the knife.

In the middle of March, I noticed that there was some very slight swelling around the right-of-center part of my abdomen, around part of the surgical scar. The doctor has warned me that there might be odd swelling up to a year afterward, so at first I dismissed it. Also, I had just spend two and a half months “healing from surgery”, so I wasn’t keen to go running back to the doctor right away; I wanted to spend that time and energy getting back into the swing of things post-separation, booking some gigs and finishing the book. Every week I’d say to myself or Rave, “I should call Dr Sacks about this swelling in my belly; it looks a little worse.” And then I’d get distracted doing other stuff and wouldn’t. I kept assuring myself I had the six-week checkup already planned and if nothing else, I’d be seeing him then.

Six weeks finally passed, and I went to see him for the appointment. As soon as he walked in the room, my guilt jumped out at him and said, “Don’t be mad at me; there’s been some swelling. I kept thinking I should call you, but I was busy with other stuff and was afraid I’d have to go on hiatus again to deal with it.” He laughed; he reminded me that this is my body, not his, and if I want to ignore something I had the right to do so. He’d eat those words a few weeks later.

This is an interesting thought, and something worth going on a bit of a tangent on, if you’ll indulge me. (Again, if you want to skip ahead to the part where I get to the point, feel free.) Between having friends who deeply care and sometimes feel invested in my well-being, and being a blogger who shares their medical journey with the general Internet public, it can sometimes be overlooked that we’re talking about my body, and that everyone has made decisions that did not put their body or their health at the top of the priority list. Whether it’s extreme sports or eating a triple bacon cheeseburger with hamburger patties for buns, we accept that sometimes the experience is worth the risk. But when one is both public and chronically ill, people tend to want to bundle us in soft cotton and keep us from any extra suffering. It’s actually something I’ve read quite a bit about when reading disability advocacy and activism papers; that part of fighting for body autonomy is fighting for the right to do unhealthy or risky things with one’s body regardless of one’s state of health/ability when they make that decision.

In writing this blog for over a year, I frequently get emails, comments, or find myself in conversations, in which people basically inform me that they know more about how to treat my body than I do. That’s not what they say, but it’s what they mean. When someone sees me eating something delicious, but not the most healthy (or these days, merely something I’ve previously stated is a food or drink I am avoiding) they feel they not only have automatic permission to point this out to me, but in some cases, they physically take the food away or publicly shame me for making that choice.

During this hospital stay, people have been bringing me slushies from Sonic, which is a total Del comfort food. They’re basically fruit, simple syrup, and frozen water (and I get the ones that Sonic claims are made from “real fruit”, rather than just a flavored syrup), but it doesn’t take a food scientist to know that they’re full of simple sugars. My blood sugar numbers have been pretty shitty lately, and most of that is due to stress/pain. However, I’ve noticed a behavior among the nurses here that I really wish the rest of the world would take a cue from: they don’t care. When I get “caught” – when a nurse comes in to take my blood sugar only to see a half-empty Sonic slushy on my table next to my laptop – the nurse doesn’t actually say or do anything at all. It’s me, responding to years of programmed fat-and-sugar-shaming, that immediately jumps and says, “You caught me. I was having a slushy.” And it is Pavlovian, this response, because my experience from the last few days has shown me that the nurses don’t give a damn. It’s the people visiting me who make the judgement statements or even just a joke about how terrible it is that I’m drinking this thing.

It’s as if disabled/chronically ill bodies no longer belong to the person using them. We are community property, open to scrutiny and judgement by anybody, but most often by people who think they know better. However, I will assert that when a person feels entitled to judge another based solely on what they see/hear/know in the moment, or solely on what that person shares on the Internet, frequently their judgements say more about them than they do about us. Someone may attempt to shame me for my choices, as some sort of dodge or deflection about their unhealthy choices.

There’s more I want to say about this, but this tangent is getting really long and you’re more interested in what’s going to happen next in my hospital story, so remind me to come back to this sometime.

He didn’t think the swelling was anything particularly surprising or negative, but he sent me to get a CT scan right away to see if it was a new fluid collection or abscess. It turned out I had a much smaller (9mm) fluid collection, but that it was not infected. I got another drain installed via Interventional Radiology (IR), but there was (oddly) very little fluid coming out. What did come out was serrous fluid, or basically white blood cells. I only had the drain in for a week and a bit, as it mysteriously fell out of it’s own accord on that Sunday when I was at Charm City Fetish Fair.

The day before that happened, Saturday April 6th, was a very bad day. Even though I knew I needed to be up very early (for Dels) in order to go to Charm City and register, I could not for the life of me get any sleep the night before, mostly because I felt pain and nausea. It was bad, really bad. Probably the worst chronic illness day I’ve had in the last two years. We got to the hotel and I went right to sleep, woke up, did my class/panel, went right back to sleep, woke up for my volunteer shift, and then sleep. I couldn’t really eat or even drink fluids because I was so sick to my stomach. I emailed my surgeon and his PA to tell them how bad I was feeling and asking for their advice. Dr Sacks felt it was no big deal and to be expected, whereas his assistant thought going to the ER there and then was the better choice. As I was not feeling inclined to go to the hospital, and Dr. Sacks was assuring me it didn’t have anything to do with my abdomen, I decided to stay at the event.

As part of my earlier tangent, I wanted to add another point here. Again, feel free to skip this part.

Another way in which people outside of my immediate circle judge me and my choices is when they criticize me for leaving the house. I have lost count of how many times someone has suggested that if I only stayed home more often, or rested more, or did less work, or some other way confined my life to my bedroom, I would miraculously feel better and/or have taken better care of my body. They also feel entitled to make those comments because I openly write about financial struggles and have received donations from people in the past to help cover medical costs; and yet, I also write about going to parties or events or in some other way spending money on a social life that, in their opinion, would be better spent on medical costs.

I can’t stress enough how backwards this is. If I never go out and never do fun things, then my entire life becomes restricted to “being sick”. The only people I know – and I do know them – who want their lives to completely revolve around being ill/having medical emergencies, are mentally unstable. They thrive off of the attention people who suffer are given, and they are immediately jealous if someone else gets one iota of attention because that other person is also suffering. It’s as if there is nothing redeeming about them, nothing worth paying attention to or engaging with them over, except their illness.

I, and I like to think saner people, fight that perception with every bone in our body. I begged Baphomet to allow me a second blog specifically because my online presence had become completely focused on me being sick, and it’s not the only, or even most important part of my identity. But in order to do that, writing about my adventures is not enough; I actually have to go have them. Now, this doesn’t mean that I spend the grocery money (or the prescription money) on sex toys and roller coasters, but it does mean that – gasp – I choose to cut back on one thing in order to have fun, and also that – gasp – I frequently go out and do fun things when I “should” be home resting. Anyone who tries to shame me for leaving my house twice this month, putting off seeing the doc by a week or two, doesn’t understand or support the concept of people living full, complete, joyous lives. And that’s just sad, because it means that their life is so boring, so empty, that their idea of fun is to criticize and ridicule some random person on the Internet for doing something fun.

Sunday morning came, and our plan was to get dressed, eat some breakfast, take a look at the vendor mart, and go home. A friend of mine was in charge of vendors and was telling me that no one was buying stuff and the vendors were feeling kinda desperate. As I was getting dressed, I turned at one point and realized my drain was on the bed, and it was too far away from me to still be attached. Sure enough, upon closer inspection, I could clearly see the end of the tube that goes inside of the abscess lying on the bed like it was just another piece of my outfit. I emailed Dr Sacks and his PA again, and this time they both stressed that I should only go to the ER if I felt I had to, because there was really nothing the ER could do to assist me. I bandaged up the wound and left the hotel for home, spending most of the next two days asleep.

I was looking something up online about Isoniazid, my TB drug, when I remembered about liver-toxicity, which is a well known and documented side effect that hits those who get ill a lot. I brought up a page on the med and lo and behold, there’s a list of all of my current symptoms under the heading, “Seek out medical attention immediately if you experience…”

I had been waffling about calling a new PCP or going to see the old one. My PCP is no spring chicken, but at least I’ve been with him for long enough that I feel like he knows what’s going on and how to look at the bigger picture. However, I couldn’t get in to see him specifically, but another doctor in his practice. My ride shows up to take me to the appointment, and even she suggests we skip it and go directly to the ER instead. At this point, however, I’ve created this narrative in my head that says “If you go to the ER, it will be an emergency. If you go to the doctor, it will be no big deal.” I even reaffirm my decision when we reach the point in the journey where we could still peel off and go straight to the ER.

Well, we know how that played out. The PCP listened to what I had to say, and immediately knew she was out of her depth and I should go to, not just the ER in general, but the ER at Johns Hopkins, since I’ve been working with them and my files are all integrated. So my patient driver and I hop back in the car and reverse our trip to JHER.

It is quickly realized that I do not have a liver problem, but whatever is ailing me is fucking serious. I get admitted fairly quickly, even though it takes hours upon hours to get a bed. I start to feel much more ill as they park me in a tiny waiting room (which they now swear is a “staging area”) for two hours with no supervision, no one checking in to see how I’m doing, and a gaggle of very angry sick people who have also be relegated to this purgatory. Finally, Rave and I make enough of a stink combined that they move me back into the ER proper but we have to continue waiting for a “real bed”.

We learn that the new fluid collection has grown larger. It now has a “skin”, a membrane that holds it all together, which makes it really difficult to kill with antibiotics alone. They take cultures and try to determine exactly what is in there and what way is best to treat it. I end up losing the fight over getting a PICC line or central line when they start running Vancomyacin through my veins, and I blow three or four veins that first night alone.

The next few days are kinda blurry for me. See, at the same time, I started suffering from very short bouts of amnesia. I would forget where I was, or what I was doing at Johns Hopkins (I kept thinking I was back in High School). I got a neuro consult and although they’re testing just to make sure I didn’t have a mini stroke or temporal lobe seizures or anything like that, they think it might be a side effect of long term use of narcotic pain meds. I don’t know if I agree, but I do admire them for at least making an effort to make sure it’s not something more serious. They chided me a bit for not chasing the neuro stuff more aggressively (like going to get all the test my neuro ordered or going to see him more often) and I explained that I have been putting out fires since August and am doing my best.

Anyway, now you know enough of the backstory to get to the point.

Here is the TL:DR Bookmark

The Infectious Disease Doctors, The Plastic Surgeons, and The General Surgeons all agree.
The reason I am getting these infected abscesses in my abdomen is because of the mesh that was used during my ventral hernia repair back in 2009. Yes, that was Dr. WLS’s doing.
They used mesh to hold up and strengthen my abdominal wall, and in the process the mesh grew a “biofilm”, basically, a wonderful fertilized area for bacterial infections to grow and flourish.

Option One: “The Big Deal”

I will continue to have these infections while I still have the mesh inside of me. Removing the mesh, however, would be a big deal surgery wise. The mesh is covered in adhesions, and may very well be attached to my intestines, and it was put there for a reason. So this surgery, which I’ve nicknamed The Big Deal, would be a team of surgeons going in, finding said mesh (it doesn’t image well on CT or Xray), carefully removing all the adhesions, removing it from my bowels (which could get complicated very quickly, and include such favorites as “Bowl Resection”).

The surgeons are giving me all the exact same doom and gloom songs that they did about the surgery in December; that I will definitely be in the hospital for close to a month if not longer, that there is a really good chance I won’t make it through the surgery (especially now that I had a hiccup in the Dec one), and it will be a very long and difficult recovery with lots of creative agony and embarrassment. But this time, none of the surgeons want to do this surgery. They all feel this is something we should wait, and plan, and know the area super well beforehand, for the reasons we all know and have discussed.

The only way The Big Deal would happen during this hospitalization is if I spiked an abnormally high fever (like 104), or in some other way showed signs of advanced infection.

Option Two: “History Repeating”

My second option, which is still very much on the table for this hospitalization, is to address this specific abscess. That would entail having much the same surgery that I did in December; it would be much more superficial than The Big Deal, in that it would not entail cutting into the muscle wall or anything like that. It is still as dangerous as it was last time, but we also know that I did very well with the surgery itself and healed fairly well.

Option Three: “No Cuts, Just Infinite Pills”

This is the option most of the doctors (but not all) are currently advocating for, depending on how the next few days go while I’m here. This course would be to put me on really strong “nuclear bomb” home antibiotics, either via a PICC line or oral meds, for six to twelve weeks. After that, I would be given a permanent prescription for whatever antibiotic they feel will fend off more infections in the abdomen. I would still have the mesh, and that would still be fertile soil for growing infections, but the antibiotic would hopefully keep the infections from becoming anything to write home about.

Before you get all excited that there’s a non-surgical option, there are some big drawbacks to both being on a nuclear bomb level antibiotic for six to twelve weeks, and there are some bigger drawbacks to being on a permanent antibiotic prescription. Now, I’m saying “permanent”, but that makes the assumption that we never decide to try to correct the problem surgically.

Now, this makes it sound like I have a decision to make, right? Not really. I need to be informed about each of the options, and have a general understanding of how I feel about them and how seriously I want to pursue them. But how things like this usually play out is that the doctors will look at all the test results and data and make the best decision based on their knowledge and experience, and then recommend that choice heavily to me. It doesn’t mean I couldn’t chose to advocate the fuck out of a different choice if I really wanted it (like in Dec, when Dr Sacks kept suggesting reasons why we’d postpone the surgery another six weeks), but I’m the type of guy who trusts but verifies.

If we lived in a world where I could make a free and conscious choice, I would probably choose History Repeating for the right now, and then spend the summer preparing for The Big Deal. I’ve already reached out to Dr. Awesome and asked her if she might be willing to look at my current records and give me a consult over what she thinks is the best choice; but I did this with the covert agenda of asking her to be my surgeon for the Big Deal. Dr. Sacks would handle History Repeating, but I know from past discussions that he would feel uncomfortable doing The Big Deal all by himself. He and Dr. Awesome have worked together in the OR before, so it’s possible to get them to team up for The Big Deal.

Right now, they’re still trying to get a very accurate understanding of what types of infection I have growing in my abdomen, and also digging up information about the mesh that was installed – when, what type, where, etc. If I had to take a wild guess as to how much longer I am going to be here, I’d say at the minimum three more days, at reasonable maximum (barring surgery) I’d say a week or a week plus a day or two. If History Repeats, I would bump that up to two to three weeks.

It’s been a week since I made the decision that my marriage was functionally over. There’s been a whirlwind of questions since then; from him, my friends, and most of all from me. He is trying to convince me that he wants to fix things, that he is really committed to this relationship. I’ve also been looking into temporary options; it’s been hard sharing living space with him, as it seems any time we sit down to talk it turns into emotionally wrenching, snot nosed emotional venting. I can’t keep that up on a daily basis and maintain my sanity.

One of the big questions is about where I am going to live, both in the short and long term. I told him I would stay here for 30 days, but that’s quickly turning longer. I’m scheduled for surgery on Sept 19 and I have nowhere else to coalesce. I also don’t want to jump to any long-distance options because that means rebooting all my health care – finding new doctors, starting over, getting new scripts. This is a bad time for that, what with the neurologist actually making progress. So staying here is unfortunately probably my best option.

What makes it hardest for me is that I feel that one of the reasons he felt he could do what he did is because in his head, I can’t leave. My partners are very concerned about me living alone, even if the option of a PCA were to manifest. There would still be no one there to help me should I need to go to the hospital in the middle of the night, or if I need help getting around my house, or if I fall. But that concern gives him an undeniable advantage.

Do I need him? Has my health progressed to a point where being single would be detrimental to my health? There’s definitely a part of me that feels if I really am facing the downslope of my life, the better choice might be to swallow his indiscretion in exchange for companionship as I walk this road. But that’s a want, not a need. What are my needs, in term of day-to-day living?

As of now, I spend most days alone. He goes to work, and I hang around working on the computer or watching streaming video. I make phone calls and write. I rarely go out and do things, as most of my friends also have day jobs. I go to doctor’s appointments, and it’s the exception rather than the rule that he takes time off to go with me. (He sometimes does so I can have a ride, and once in a while if the appointment carries weight, he’ll go.)

But I admit that I also put some stuff off until he comes home, so I can have his assistance. I usually need help to change the sheets on my bed, to retrieve items from upstairs, and go to the store. I like having one person who has walked the whole experience with me, that I can discuss new developments with, so together we can process and brainstorm and make decisions. Sometimes, he makes sure I eat (between the nausea and the pain, sometimes I won’t eat without coaxing). He massages my legs when they are painful.

Once everything was out in the open, I told myself that I had to prove to him that I didn’t need him just because I am disabled. I had someone else go out and get enough food that I could feed myself with the equipment I have in my room. I had them bring down clothes from upstairs and do a load of laundry. I made sure my meds were up to date. I got rides to all of my upcoming medical appointments. I wanted a semblance of independance, a feeling as though when this ends, I will be okay.

It’s been interesting. He comes home from work and we share an awkward conversation because he’s used to me asking him to do stuff, to bring home dinner, to talk about my doctor’s appointments, but instead I tell him I’m okay and leave it at that. He keeps reminding me that if there is anything he can do for me, he’s willing. When I finally asked him to run me a small favor, he took it very seriously – in a fucked up way, it felt like giving an addict a hit.

I know he has serious White Knight syndrome: he’s very attracted to people who have an obvious need in their lives. Almost all the people he’s dated (including *that* one) have been people who suffer from challenges he’s been able to help with in some way. Whether they have serious health issues, or are in neglectful relationships, or just need a confidante to talk about their lives with, it makes him feel valued and cherished to be that person for them. I see it as clear as day.

What I’m afraid of is that is all that’s left for us. That the reason he chose to deceive, rather than leave, me, is because of some odd sense of obligation. No one wants to be someone else’s obligation, least of all me. I keep telling him it’s about choice: I want him to choose to be here because it’s the best option in his mind. I want him to desire me, to be the first person he wants to share his thoughts and dreams with. I want him to want me for all the unique things that make me awesome; I do not want him to want things to work out because I’m disabled and need someone to take care of me.

I want a husband, not a PCA.

For now, I’m moving forward. I had a sleep study last night in hopes that a better CPAP setting (or a BiPAP, for that matter) may help relieve some of the brain-fog I have. Also, good night’s sleep helps my pain tremendously, and in the past few months my sleep quality has decreased significantly. And my neurologist is also a sleep specialist, and this was one of those things he insisted I do before we move forward. I have several appointments next week, including meeting with the GP about getting new STI tests. (Not something I’m particularly happy about, but in light of what’s happened, and it’s about time anyway…) I continue to think deeply about want vs. need, and what I need moving forward; both in terms of taking care of myself physically due to the challenges I have, as well as emotionally and romantically.

Today I finally got one of the tests that Neurologist number 5 prescribed back in November. (Things have been kinda hectic, medically, since then, so I put them on the back burner.) It was a EMG, specifically a surface EMG. This means they put conductors on my skin and ran increasingly strong shocks through my nerves to see how they reacted.

The test was quite painful. At the higher levels, it actually felt like my tics do, and some of the shocks caused noticeable tics for a few minutes afterward. This is a good thing, as I rarely seem to tic in front of a doctor during a visit, so at least a medical professional has now borne witness to the phenomenon. It may also end up helping me better explain what I mean by “tic” to doctors, too. But let me tell you, it hurt. I cried, and I’m no pain wuss. In fact, for several hours afterward I felt sore and my nerves were over-active.

Because this office is awesome, after the test was over the doctor came in and told me the results. (Usually, when you get a medical test, the tech can’t tell you anything about what’s happening or what they see, so you end up having to wait until your next appointment to find out what it all meant.) He was very concerned – I’m not entirely sure what it means, but he repeated that I had “low amplitude” several times. He first posited that this might be because I am obese, but I pointed out that my limbs are fairly slender and I carry most of my fat in my torso. He agreed with me, and became more concerned. He decided that since the results were markedly “low”, that there could be some “artifacting”, which I assume means that there was something wrong with the test or how it was administered.

To my dismay, his recommendation was to repeat the test at one of the Big Hospitals in our area. I’m starting to think that living in an area where I have access to two major cities, and thus their world-renown hospitals, may be a double-edged sword. I used to think it was a good thing, but with all the crap I’ve had to put up with from Johns Hopkins (including sending letters in the mail asking for an appointment and them going unanswered – after several attempts via phone and email), I am starting to dread the Big Hospital referral. The neurologist suggested other Big Hospitals (George Washington being the one I’m going with). I’m also unthrilled, obviously, that I have to undergo a pretty unpleasant test yet again; especially now that I know how bad it is.

There’s a second kind of EMG, where they test the nerves inside your muscles. This requires a needle-like probe; I’m not afraid of needles at all, but I had another neuro try this test with me and it was so painful I had them stop the test. This neurologist wanted to try that test, but seeing what shape I was in after the surface EMG, he decided I’d had enough “torture” for one day.

Part of me is kinda elated; finally, a test that proves that there is something neurologically wrong with me! After all the hoopla of getting various MRIs, and having to find stronger machines that can accommodate fatties like me, only to have doctors dismiss me because I couldn’t find an appropriate machine; this is actually progress. But part of me is scared: that list of disorders that abnormal EMGs can mean is pretty daunting. I did notice that Polymyositis was on the list, and that’s a diagnosis I’ve heard before from my pain management doctor. (It’s one of the ones that qualified me for the wheelchair.) It basically means “inflammation of the muscles”, which doesn’t explain half my symptoms, but it’s a word. And words are powerful.

Of course, since my neurologist is also a sleep specialist, he noticed I had not yet had my CPAP titration, and he is concerned that my apnea may not only be playing into some of my symptoms, but as he put it, “Neuropathy won’t kill you, but apnea will.” So he wouldn’t let me leave the office until I scheduled that. He did do me a solid – he wrote on all the paperwork “Patient may sleep on their side” – most sleep studies force you to lay on your back, but a) I don’t sleep on my back, ever, so it doesn’t accurately represent how I sleep at home, and b) sleeping on my back is uncomfortable and even painful from time to time. So I’m doing that next week.

A little news on another medical front: it turns out that even though I have most of August free, the OBGYN isn’t available for the D&C/ablation until September. In better news, however, he has decided that I can have both procedures at the same time, instead of two weeks apart. Scheduling-wise, this is a good thing, but I’m a little concerned that my manly-parts will need extra time to heal after such ‘abuse’. Right now, it’s scheduled for a week before a camping-in-cabins event where I have to be fairly active; we are actively trying to reschedule it for later, but my schedule really doesn’t have another big hole for recouperation until December. I have to decide if it’s more important to get it done sooner rather than later, or wait until I have copious enough time to heal at home. Like most things in my life, it will likely end up a compromise.

I’ve been having a fairly bad pain flare since I got home from Camp Out. For the first few days I was basically bed ridden and able to do little more than watch tv. My boyfriend came to visit and I was active while he was here (stop your dirty thinking…), and I also didn’t get the kind of sleep I’m used to (hey now…). I will tell you a secret: while he was here, I was smiling through a lot of pain. My desire to ‘live life’ was higher than my pain, so I tried as hard as I could to keep up.

I even went through with the plans to get a new tattoo – the funny part being that the pain in my legs hurt much worse that the ink – but I think I’m starting to pay for all my fakery. I feel like I might be coming down with a cold or the flu or something like that – a little sore throat, a little flu-like achyness (which doesn’t feel like my regular pain), my ear acting up – which is a typical Del-body response to pushing too hard. It probably didn’t help that I did a fair amount of spirit-work type stuff (channeling, etc) while he was here, and that always throws my body for a loop. I need to find a way to draw a boundary around how much of that happens while we’re together – he kinda relies on me for messages from his God, since his “god radio” is fuzzy at best, but at the same time I don’t want our relationship to become rooted in me doing spirit-work for him. There’s a post for SGRS coming up on this part of our relationship, mostly because I feel there’s a dirth of writing about being the partner of someone with a God-relationship.

I’m going to go into spoon-recovery mode for a few days, so if I’m not super responsive to email/FB/etc, you know why.

I saw the (somewhat saner) infectious disease doctor, and I start my TB treatments after I get back from Brimstone. I’m grateful that I can finally start, but I’m also hesitant because these drugs have a reputation of tearing you apart. I have to get regular liver tests, and stay away from things that tax my liver; I’ve also heard they wreak havoc on your G.I. systems. On top of that, they will make my pain drugs work less, if at all. So though I’m happy that I will be TB free in a few months, those few months scare the crap out of me. The good news is but I will see my pain management doctor after I’ve been on the TB meds for a couple of weeks; hopefully, he’ll have some ideas as to better manage my pain once we know exactly how ineffective the narcotics will be. There is a little fear that I will suffer a similar reaction as I did in June (I was hospitalized due to an interaction between fentanyl transdermal patch and the TB meds that caused me to go into immediate withdrawal even though I was wearing a brand-new patch); the ID doc said that if there is any wackiness I should go to the ER. Let’s hope that’s not what happens.

I also got a surprise phone call from the new neurologist today. I was supposed to see them in mid-December; and was angsting because I have pretty severe nerve pain and December was a long way away. it seems they had a cancellation for Friday (tomorrow as of this writing) which makes me a very happy Del. it also means that there’s a good chance I will get a script for an MRI — those of you who know, know that I have been looking for an MRI to accommodate me for almost a year now; Johns Hopkins just got two new machines that sound like they may fit the bill. If that works out, I may be able to get my pain management doctor to play nice with the neurologist and see if we can’t come up with a better solution for my neuralgia.

so wish me luck tomorrow with neurologist number five. I’ve worked with him before; he is also a sleep study specialist and was the one that prescribed my CPAP. I really enjoyed his candor; Ninja has been seeing him for neurological stuff and really likes him. His office is about 25 minutes away from my house; not quite as bad as going to Johns Hopkins but not as convenient as neurologist number three (who blamed everything on my opiates).